My name is Allison and for the past five years I've been fighting a series of serious and complex chronic illnesses. I'm not someone who asks for help easily, but I've reached a point where I have no other option, and I believe in being honest about why.
In 2020 I was diagnosed with POTS, a condition affecting my nervous system that significantly changed my daily life. What followed has been a years-long medical journey of worsening symptoms, hospitalizations, and diagnoses that keep compounding. In 2023, severe bone infections in both feet required surgery to remove the infected bone tissue, followed by a PICC line and two months of intensive IV therapy at home, around the clock, every few hours. In early 2024, I received a lupus diagnosis. By late 2024, another infection put me in the hospital for weeks. During this time I experienced acute kidney failure and a heart attack. I left that stay with another PICC line, another two months of IV therapy, and a partial amputation.
My body has never recovered.
Since last fall, I have been housebound, and more than I'd like, bedbound. I have to rely on mobility aids to move through my own home. Fatigue, severe daily pain, and neuropathy have made it impossible for me to work. My husband and I have been fighting for disability benefits for years and continue to be denied time and time again.
In early 2025, a new round of bloodwork came back with results that alarmed my rheumatologist. The new diagnosis is Granulomatosis with Polyangiitis (GPA). It is a rare autoimmune condition in which the immune system attacks the body's own blood vessels and organs, including lungs, kindeys, sinuses, and nerves.
It is serious. Left untreated, this is life-threatening.
We were blindsided, and now we are scrambling.
What these funds will cover:
- Chest CT scans to assess lung involvement (Scheduled March 30)
- Skin biopsies (minimum of 2) to determine the extent and location of disease activity
- Immunosuppression treatment (infusions and medications) once a treatment plan is confirmed
- Specialist monitoring appointments for a minimum of one year following diagnosis
- Ongoing management of coexisting conditions: Lupus, POTS, Fibromyalgia, Neuropathy
Where the $29,400 goes:
- ~$720/month for out-of-pocket medication, specialist copays, and wound care supplies
- Transportation to and from frequent medical appointments
- Lost income while unable to work
- Upcoming diagnosis procedures and anticipated treatment costs
- A small buffer for the unexpected. With this disease, there will always be something unexpected.
If you're able to give, share, or even send a kind word- thank you. Every bit genuinely matters.